Open letter to Polish president

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Published: 13 June 2016

Due to the omnipresent disability of providing children with NCL2 with treatment, we as the parents wrote the open letter to the Polish presidential couple. The letter was published in naTemat.pl and the problem was taken on by Anna Kaczmarek. You make it easier for us. Sometimes we do not even know whom we should thank. We are not always able to do it in person, but we are always thinking about you. This smile is for you!

Panorama: ”Special” diseases

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Published: 13 June 2016

Kuba’s history is only one example out of 2 mln. Just before the day of rare diseases the topic of the national plan returns, more about it in Panorama on TVP2 (from 23 min): http://panorama.tvp.pl/23872511/23022016-1800 I believed that our 2 years of wandering was just a coincidence for a moment. Unfortunately we are the classic example of the black hole in the system. Even Romania has a better approach to rare diseases. I recommend the Łazarski University’s raport: http://www.gazetalekarska.pl/?p=20970